To the New Parents Googling Their Baby’s Down Syndrome Diagnosis

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To the parents who just received a diagnosis of Down syndrome:

I remember when we were pregnant with our first child and I absolutely couldn’t wait to find out the sex of our baby. I was certain I’d never been more more anxious before in my life. Once we finally reached that precious day and learned the sex of our first child, I did calm down… for about 30 seconds. I was impatient about putting a face to the name we chose for her. We spent too much money to see 3-D images of our girl that didn’t give me any better idea of what she’d actually look like. The second time around I was equally as excited and impatient to see our second daughter’s sweet face, but I managed to pass on the the expensive extra images and wait a little more patiently for her entrance to the world for our first official viewing.

The third time, however, we received additional information with our gender ultrasound — the diagnosis of an extra copy of the 21st chromosome. I pulled up Google faster than I could even say Down syndrome to find out what to expect. I read and read over the next few months. I loved her with my whole heart already.

After all my research, I thought I knew exactly what and who I was expecting. I’d spent months reading the same bits of information just reworded a million times; we were having a floppy-limbed, flat-nosed baby with almond eyes, a protruding tongue, curvy fingers with a straight line across her hand and a tiny little neck. She probably wouldn’t be able to speak to us very well if at all. She probably wouldn’t walk for a long time, and she would likely be pretty delayed in just about every area imaginable. Right? Wrong!

I could list all the many ways my daughter, KC, and many others we know with that extra awesome chromosome prove that so-called research wrong, but instead I’ll say this: when I think about what would’ve come up if I Googled “what to expect with my typical daughters,” the answer is I’d still have no idea how they’d turn out. I’d have no idea one would have beautiful, hazel, almond eyes, an incredible love of learning and an unimaginable memory. I’d have no way of knowing our other little girl would be able to make me laugh every time she opened her cute little mouth (especially when she’s supposed to be in trouble), or that her big brown eyes would sparkle back when the most girly, princess-y dress you’ve ever seen is held up in front her.

Similarly, I never would’ve found on Google that our KC’s presence would instantly inspire us or that she’d love baby dolls, tea parties and Batman with her whole heart. Or that her sweet little voice would be one of my favorite sounds, especially when she’s standing under my feet in the kitchen, singing “guacamole, guacamole.” I had no way of knowing until I met her that her extra chromosome would be the farthest thought in my mind when I look at her contagious smile.

The fact is that, you can’t Google who your kid is going be. Only experiencing them each and every day will show you. I’ve learned, extra chromosomes or not, they’ll be amazing people who rock your world from the first moment you hold them. They will own you the first time they look into your eyes and you see all the potential in that little face with the incredible, unique features you and your partner combined to create this amazing person.

If you’re one of the lucky few who gets a little extra to love, I believe you’ll be honored and humbled by all of the opportunities you now have to prove wrong the incorrect, repetitive, biased articles you come across when you research this new diagnosis on Google. I wish the first thing you read was this instead: “Congratulations on your uniquely perfect gift!”

Joy Parman's daughter

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Princess Diana's Goddaughter With Down Syndrome Responds to TV Star's Hateful Comments

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Domenica Lawson, goddaughter to the late Princess Diana, has responded to comments made by a British reality TV personality about people with Down syndrome.

Ursula Presgrave, 24, who appeared on BBC3’s show “The Call Centre,” posted on her Facebook page last week her thoughts that all people with Down syndrome should be “put down,” Wales Online reported. The post, later removed, said the following:

“Anyone born with down syndrome should be put down, it’s just cruel to let them lead a pointless life of a vegetable.”

Lawson, 20, has Down syndrome and is the daughter of Rosa Monckton, who was close friends with Princess Diana. Lawson was born two years before Princess Diana’s death and is now a student at City College Brighton and Hove, according to her Facebook page.

Lawson recently spoke out about the hateful comments and wrote a letter to Presgrave, the Irish Mirror reported.

With Downs syndrome we are born this way and we are not like vegetables – that’s a mad thing to say. This is my life,” Lawson wrote, according to the outlet. “You can’t say put Down’s Syndrome people down like a dog – it’s upsetting and it’s not on. So what if we are Down’s Syndrome – it makes us who we are. We are real people.”

Since Presgrave’s original comment sparked outrage on Facebook, it has been removed and police have launched an investigation into the post after receiving a number of complaints, Wales Online reported.

Hear more from Rosa Monckton and Domenica Lawson in the documentary about children with special needs below, called “Letting Go.”

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I Dreamed My Son Didn’t Have Down Syndrome. I’m Glad It Was Just a Dream.

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I had a dream this past week that my son Baker woke up without Down syndrome.

It was as if his extra chromosome was absorbed into his plush, minky sheets. Or as if the sandman had carted it off in his knapsack and tucked it beside the lavender he used for lulling.

It was gone. Kaput. Vamoose.

His beautiful eyes still boasted their autumn pools but lacked the almond slant that never fails to draw me in and captivate my whole being.

His tongue remained tucked obediently inside his cheek, not once lagging like it does on occasion, especially when he’s focusing so intently.

His hands hung by his side, not in front of his face for signing, as words bounded from his lips — articulate, coherent and utterly foreign.

As I reached in to hug him, his body didn’t collapse into mine, which is my favorite thing about Baker — the way his low muscle tone makes him puddle into my eager embrace.

He was stiff. Solid. Strong.

His steps didn’t waiver, not once did his balance falter. He was sure-footed and walked with a stability his little body has never known.

In that instant, he became a typical child. Gone were the thoughts of IEPs. Therapies were tossed into oblivion. His challenges became successes. The specialists on speed dial were no more.

I sat abruptly in bed. Tears streaming. Faint whimpers escaped my lips.

I navigated through the dark room and padded the familiar steps to Baker’s bed. I picked him up and felt his warm body fold sleepily into mine.

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It was just a dream. He was still the same Baker Boy I’d read “Let Me Hold You Longer” to while his little body relaxed and his eyes grew heavy.

He was still the same Baker Boy I’d rocked and sang “This Little Light of Mine,” and to seal the deal, “You Are My Sunshine” to only hours earlier.

Nothing had changed. Everything had changed.

I don’t know who said it originally, but I believe it to the very depths of my being. I never knew I wanted a child with Down syndrome until I had one. No truer words have ever been spoken.

He’s loved exactly the way he is. I believe he’s one of our Creator’s greatest masterpieces. He was crafted in love. He was knit together wonderfully. He’s a joy spreader, a light brightener, a glad giver.

Being his mother is the greatest blessing. I believe watching his life bring glory to our Jesus is an incredible gift.

Just the way you are, sweet Baker, we love you just the way you are.

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Reality Show Turns Drawings by Artists With Down Syndrome Into Tattoos

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On the reality TV show “Ink Masters,” tattoo artists compete in various challenges to show off their skills. Last week, the show asked the artists to display a different skill — working with clients with special needs.

The judges brought out seven people with Down syndrome and their loved ones and told the remaining contestants that this week’s challenge would be working with these people to help them draw a design that their loved ones would then get tattooed.

The tattoo artists listened to their clients and offered guidance, but the artwork was done by the artists with Down syndrome. In the end their loved ones were thrilled with the original artwork they now had as a reminder of their siblings and children with Down syndrome.

See some of the tattoos below: 

colorful tattoo on arm

colorful jack in the box tattoo on back shoulder

There’s times when you question if you’re really doing something somebody wants to have for the rest of their life,” Craig, a contestant on the show, said during the episode. “But this is one of those moments where you don’t even have to ask any questions. This is why I’m a tattoo artist — I just want to do something really special.”

Watch the reveal of the tattoos in the video below: 

Visit the Spike website for clips from the episode.

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How These Twins With Down Syndrome Are Helping to Dispel Misconceptions

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The odds of two identical twins both being born with Down syndrome are estimated at about one in a million, according to DownSyndrome.org. And yet, here are Abigail and Isobel Parry — 4-year-old twins who both have Down syndrome.

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The twins were diagnosed three weeks after their premature birth in June 2011, the Mirror reported. Their parents, Matt and Jodi Parry, launched a charitable trust called Twincess after their daughters’ births to spread awareness about Down syndrome and share their journey. It is important to them to try and dispel many misconceptions surrounding the condition.

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I hope that by sharing our story it will help other people and our own family,” Jodi Parry wrote on Twincess.

Downs Twins Start Main Stream Primary School
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On Monday, September 7, Abigail and Isobel started their first day of primary school at the local mainstream school in Chorley, England, where they live. They will be attending the same school as their older brother Finley, who’s 6. It’s an extra special milestone for the Parrys, who, when their daughters were born didn’t know whether they would achieve this.

Downs Twins Start Main Stream Primary School
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“When the girls were born, we did not know if they would be able to go to a mainstream school… This just shows how far we have come in our own understanding of Down’s syndrome. We had misconceptions, which a lot of people have, and that is what we are trying to tackle,” Matt Parry told Yahoo News. “In sending Abigail and Isobel to a mainstream school, we have chosen to push them to succeed as much as we can, but we are not blind to the fact there are alternatives should they struggle.”

Downs Twins Start Main Stream Primary School
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Madeline Stuart Just Rocked the Runway at New York Fashion Week

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Madeline Stuart, the world’s most famous model with Down syndrome, continues to break down barriers.

Madeline Stuart walks 2015 NYFW runway
Via Instagram

Within the last year, 18-year-old Stuart has taken the world by storm. She’s already booked contracts with brands Manifesta and Living Dead Clothing, is the first face behind the GlossiGirl Cosmetics “Beauty Is…” campaign, has a one-of-a-kind doll made after her, launched her own handbag line with a fashion company called EverMaya, and has now walked the catwalk during New York Fashion Week for FTL Moda.

FTL Moda ad for 2015 NYFW featuring Madeline Stuart
Courtesy of Rosanne Stuart

Madeline is very excited,” her mother, Rosanne Stuart, told AFP backstage at rehearsals for Sunday’s show. “I think it’s amazing that she’s been given this opportunity. It’s a fantastic platform for us to get our beliefs across on inclusion and disability.”

The show took place in New York City’s Vanderbilt Hall on Sunday, September 13 and Stuart took two trips down the runway — one for resort wear, the other for couture.

See Madeline in her couture outfit in the video below:

 

The FTL Moda show featured several models with disabilites, including Rebekah Marine, 28, a car saleswoman from New Jersey who was born without a right arm. She is proudly called the “bionic model” because of her prosthesis, AFP reported.

FTL Moda ad for 2015 New York Fashion Week
Via Instagram

The show was organized with the help of the Christopher and Dana Reeve Foundation and Models of Diversity, a British group that campaigns for diversity in the fashion industry.

See photos from the inclusive show below: 

Photo of three models with disabilities on the runway at FTL Moda 2015 NYFW show
Via Instagram

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Via Instagram

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Via Instagram
Madeline Stuart on the 2015 New York Fashion Week runway
Via Instagram

Model on the runway at 2015 NYFW
Via Instagram
Madeline Stuart next to two men at FTL Moda 2015 NYFW show
Via Instagram
Madeline Stuart walking the runway with two men at 2015 NYFW
Via Instagram
Madeline Stuart walking the 2015 NYFW runway
Via Instagram

Correction: A previous version of this post called FTL Moda a “designer,” but it is in fact a production company.

Related: Behind the Scenes With the World’s Most Famous Model With Down Syndrome

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